I went to Germany (and Prague) and came back again and it feels so good to be home. Indescribably good. Not just because I have a couch I can sit on and a bed with unlimited pillows and I can eat whenever I want things that don’t involve meat or mayo or potatoes. Not just because the temperature is 70 instead of 30 and I can understand all the signs and the words being spoken and the prices and the culture. Not just because I don’t have to be uncomfortably cooped up on a plane for too many hours, held at security unnecessarily for more hours. I am not forced to stay in my hospital bed for one day and in my room for two days eating German hospital food, bread and cold cuts, and trying to slurp down as much water as my German doctor demands, which is never enough. When you are perpetually uncomfortable at home, being perpetually uncomfortable abroad is just that much worse.

There are so many things for me to dislike about going to Germany for treatment and by the third trip these things are no longer “part of the adventure” or quirky or new or in any way exciting. What once was a novelty has become a chore. The whole time I was there, I just wanted to go home. I probably would have felt the same way at an American hospital if I was stuck there receiving treatment, but when you don’t understand the language and they don’t speak much of yours it just makes it that much more frustrating. I’m pretty sure the doctors and nurses call me the American girl who cries a lot and still needs stuffed animals when they go on long German tangents in front of me. I don’t really care. I just want to go home.

Yet, for all the suffering and angst these trips now cause, the treatments seem to finally be doing some good. Like last time, I have some new lesions that have popped up around my body. But in my liver (where most of the problems are), we have achieved the goal: stable disease. And a little bit of shrinkage. So I must return to Germany in March and probably at least once a year for a long, long time after that… or until it stops working or I can no longer afford it or my body can’t handle the radiation anymore.

So I think I have to make peace with the long plane rides, the uncomfortable hotel beds, the side effects, and the fact that I don’t understand anything that’s going on. I can fix the latter by learning German, which I think I am finally going to do now that i’m in it for the long haul. The former can be fixed by attitude. And the better I feel, the easier these trips are going to be. Hopefully I will start feeling better.

i asked the doctor when I might expect to see some of my symptoms going away, the things I have been dealing with since last February: fatigue, pain, GI issues, nausea, weight loss, my pleural effusion (which the surgery I just had was supposed to fix). He said I would have to be patient. I feel I have exercised extreme patience these past 11 months, dealing with these problems that severely impede my quality of life as a once normal late-20s year old. Extreme patience.

It’s going to take some superhuman patience to wait out these lingering symptoms…some of which are not guaranteed to go away even if my liver returns to normal size and my cancer continues to die. My pleural effusion, for example, seems to want to perpetuate to the end of time. It doesn’t seem fair that I came by all of these symptoms almost overnight last February during my surgery, and now I have to wait maybe years for them to go away. It doesn’t seem fair that I was diagnosed with cancer three years ago and I am still dealing with it. Now and for the rest of my life.

I have started calling 2013 my lost year and I am looking forward to 2014 as a year when I can move past these lingering symptoms and cancer that takes over and start living my life again, the way I want to live it. A few things have already begun falling into place for the new year… I just hope that next year I will be able to look back on this time as a dark period in my life, never to be returned to again.

6 Responses to to Germany and back again

Lindsey,
Here is to a “found year” in 2014. I don’t know many willing to travel and go to the lengths you do to get treatment abroad. You’re inspiring me and giving me insight to the ‘dark places’ my sister may be going to at times in her second year with Intrahepatic cholangiocarcinoma. Here’s to improved health and here’s a Christmas hug,
Willow

Lindsey..welcome home. I echo Sara’s comment that your determination to go to the ends of the earth inspires me. Your comments “stable disease and a little bit of shrinkage” sounds like a good beginning to 2014. Yesterday was the Winter Solstice , the longest night of the year. The secret we learn from the Solstice is that just when everything looks darkest, the light is sure to be reborn. My wish for you Lindsey is to embrace the things that are falling into place already for 2014…and that there are many more to come…a hand to hold, an ice cream to share, and moments of joy.
know that you are loved by those near and far. Sending you hugs and blessings for a new year…Cathy

If you feel you need a visitor next time you are in Germany, drop me an email.
I am not really around the corner (for German standards) and I don’t know you… but I don’t find anything wrong with stuffed animals or crying.

I could bring homemade food, too ;) Without meat, potatoes or mayo (though why somebody would say no to meat and potatoes or mayo a German will never understand). I make a good Chicken Pot Pie… of course that has chicken… as does my Chicken S’ghetti and my beans and cornbread. Oh well.

And don’t worry about what the nurses might think. I have a friend who is studying to be one and I am sure they are much less judgmental than you might fear. Most nurses I know are among the nicest and funnest people to be around. Some even cry every once in a while and I know that I have seen quite a few stuffed animals in my friend’s place. But of course she’s only 27, that might make a huge difference ;)